Davis has made some marked improvements over that last 24 hours. He has been without fever for nearly 12 hours, and his counts are beginning to trend upwards. His ANC was 12 yesterday and is 32 today. It will need to be in the triple digits before we can head home.
The antibiotic used to treat staff infections caused the allergic reaction called Red Man Syndrome. Since he needs the antibiotic, he is pretreated with a counter medication before the antibiotic is administered. The antibiotic is then given over two times the normal time span to slow the reaction down. It seems to be working for the most part. He still has some redness and itching, but it does not appear to be as severe.
Scary, huh?
Davis did manage to eat yesterday. Actually, he ate more yesterday than he has in one entire week. We have had no luck today. He has slept a great deal of the day away. He still sleeps 15 or more hours a day. This slows down normal daily functions: eating, drinking, taking medication, walking. However, sleep still trumps those activities because it works as a coping mechanism while the body is fighting the infection.
Speaking of infection . . . we still don't have a confirmed diagnosis of what type of infection it is. All the docs seem to know is that it is responding to the high powered antibiotics, so it is probably a bacterial infection of some type. They can't identify where it is in the body either.
The doctors won't give us a timeline for being discharged. It depends on his counts. We are set for chemo on Thursday and Friday, and one doctor thought that we would be able to go home and make it back for Thursday chemo. She quickly followed with, "No promises, though." I am still optimistic.
Other than that, nothing else going on here. We just sit around. Davis does play on the computer some, but he won't watch TV. He just sleeps.
Thanks for all of your kind thoughts and much-needed prayers. Although we know we are never alone, it does get lonely here from time to time. Davis misses his home and his routine. But we know that we are where we need to be. We are truly blessed to have such good family and friends who care for us so deeply.
Disclaimer: I can't remember what I posted yesterday. The last few days have been a blur. Sorry for any repeat of information.
Yesterday started out pretty rough. Davis was weepy and defiant. The docs thought it would be best if Davis was given something to treat the anxiety. He was sedated and slept for a good while. He was a new man when he awoke. He was cooperative and even went for a walk and ate a handful of popcorn. What a difference it has been.
a lot of sleeping going on
Davis's overall health has improved steadily. He ate a bit last night, and has even eaten some today. He is also drinking. He is still on a nutrient fluid drip, so I think between the both, he is staying well hydrated. He is even sleeping less, which is a sign that the infection has decreased. His counts haven't moved a bunch. His ANC (immune system) is up to 12 from 0. His white count is still critical at 0.4, and his hemoglobin dropped. He just finished his blood transfusion.
Davis spiked a fever of 101.8 last night. This is considered a significant fever because he has been on a broad spectrum antibiotic for days now. The doctor now believes that Davis has infection somewhere in his body, and that the ear infection is no longer the source of infection. While nothing has been confirmed or discovered, it is likely that the infection is a line infection (infection in his port), bacterial infection in his blood, fungal infection, strep or staff infection. That narrows it down, doesn't it. The cultures are only 30% accurate, so we may never know. The important thing is to kill the fever and have his counts recover. This means the infection, whatever it is, is gone.
The super-antibiotic that Davis has been placed on to treat the infection causes something called Red Man Syndrome. 95% of children experience this side effect. It causes his head to turn bright red and itch. If he develops this side effect, he will be given something to counter it.
comic relief arrived friday evening
We will be here for a couple more days minimum. Davis is well aware of it and has adjusted to it. He aleady has his chemo scheduled for next THursday and Friday, so I think the doctors think that his counts will be strong enough to continue for treatment. If his platelets and ANC aren't where they are supposed to be, it will cancelled again this week and scheduled for next week.
We appreciate all of your thoughts and prayers that you are sending our way. Davis is doing so much better!! Keep them coming; they're working! We no longer take for granted how truly blessed we are.
For the most part, yesterday was uneventful. Davis slept most the day. The doctors would check in periodically and update us on what they knew. They believe the infection is the beginning of an ear infection. His right ear is red and there is a bit of fluid there, but no real infection has started. They are still growing cultures as well.
In order for Davis to go home, he can not be symptomatic nor can his counts decrease. Neither of those two things are happening right now. Davis ran fever up until early this morning. We have to stay in the hospital for 24 hours after a fever breaks. We are hoping that today brings no more fevers. Davis' ANC was 0 when he was admitted, 43 yesterday, and 0 again today. His red blood cells were over 8 yesterday, and today they are 7.4. If he struggles with a headache today, he will receive a blood transfusion. In order to leave, Davis' ANC has to jump into the triple digits and continue to increase with no fluctuation. We are obviously not there yet, and there are no plans for us to leave. We will have to stay because his body can't fight an infection without help.
Davis is insanely homesick. He cried for two hours (almost until midnight) because he wanted to go home. He hates it here, and he acts out when he feels he has no control. Last night, he negotiated and argued with the floor doc about taking his meds. He kept saying to the doc, "I will take my meds if you let me get out of here." The doctor would respond, "You can not leave yet, but you are not going to get to leave if we can't trust you to take your medication." And then Davis would spout, "Well then, I am never leaving, because I am not taking the medicine." That went on forever. Our typical approach, the you-are-going-to-do-this-because-we-say-so, doesn't work anymore. Some days it seems like nothing does. He kept telling me over and over, "Mom, you have to get me out of here. Please, Mom. I am going to run out of here and go home and go to school tomorrow." Heart-breaking. Davis did take all but one medication before they gave him some medication to help with nausea. The bonus is that the nausea medication also sedates him. He was so worked up; sleep was such a blessing.
Davis continues to struggle with severe headaches, dizziness, and nausea. He rarely gets out of bed. It feels better to lie flat. He complains of headache when he sits up. He ate nothing yesterday, but did manage to drink 5 or so ounces of water. The docs are not worried about the non-existent appetite, but he will have to be eating and drinking to be able to leave.
So if the cultures determine nothing, we are sticking with the ear infection diagnosis. I am not truly convinced that that is what it is, but I am not a doctor. I really have underestimated the importance of an immune system. It reminds me of jumping out of an airplane without a parachute. It is always going to turn out badly if you don't have something helping you out. In the jumper's case, a parachute. In Davis's case, an immune system - or doctors, hospitals, and IV meds - to help fight infection.
The doctors determine a goal everyday for Davis to accomplish. Today's goal is to drink and use the bathroom on his own. Oh the things we take for granted with our healthy children.
We finally have our own room. I was able to sleep on a couch last night. It sure beat the chairs that I have been sleeping in the last couple of nights. Thankfully, we have not seen many of the families with whom we have built friendships. Sadly, the floor is full of new faces. There are a couple of precious, little ones wobbling about. They are maybe 18 months to 2 years at best. Yesterday, the music therapy crew brought instruments, and there was a little dance party in the hall. Those babies danced and beat drums for nearly an hour. It was refreshing and amusing. I don't know their names or their stories, but my heart hurts that they are here.
We want to thank all those who have texted or called and sent words of encouragement and prayers our way. You are far too thoughtful. Our most immediate prayers are for this illness to be resolved, for Davis to have peace and begin eating and drinking consistently again. And of course, we always pray against side effects and for his forever healing.
At around 7:45 PM last night, Davis spiked a fever of 101.3. He convinced me that it was because he had taken a shower, so I repeated the reading 15 minutes later. 101.7. Since he is neutropenic (low counts, ANC below 500) and has fever, St. Louis had to be notified immediately. We were advised to go to the local ER and wait for transfer.
I think we arrived to the hospital at about 8:30 PM. Sarah Bush was so kind to us. Our nurse and ER doctor were fantastic. Davis' port was accessed and blood was drawn for cultures. He was given a bolus of fluids. They later did a peripheral draw from his arm to test against his port draw. The idea is that if his port blood draw is positive for infection and his arm draw is negative, it will point the doctors to a compromised port or port infection. After the draw, an IV antibiotic was started.
The ICU transport team from Children's arrived a bit after midnight. After some paperwork and a quick examination, we were loaded into a hulk of an ambulance and driven to St. Louis. For safety reasons, I was not allowed to ride in the back with Davis, but there was an opening between the cab and the back that allowed me to see what was going on. The ride was pretty uneventful. Davis slept the entire way. He didn't wake up for any of the experience.
We arrived on the 9th floor a little after 3 AM. There was a steady stream of visitors -vitals techs, nurses, doctors- when we arrived. Another blood draw was done to test his blood for a fungal infection. A bit after 4 AM, it was lights out. They repeated the IV antibiotics this morning, and Davis was given another bag of nutrients with potassium because his potassium count had dropped. No word on the need for blood or platelet transfusions yet.
A quick briefing this morning let us know that Davis will stay here in the hospital until his fever has been gone for 24 hours and until his counts start to recover. The doctors are hoping to have more information as some of the cultures start revealing information. They will be making rounds soon.
Davis is sleeping peacefully. He has only been awake for about 8 hours of the last 24. Yesterday, he ate a cheese stick and two baked Lays potato chips. That's it.
We appreciate your prayers. We are praying that whatever this is, it is minor and Davis will be well soon. We thank you in advance for doing the same.
The last couple of days have been a blur. Davis developed a migraine on Monday that intensified on Tuesday. He was experiencing nausea and dizziness. He explained the feeling as non-stop car sickness. He didn't have much of a fever, and his chemo on Friday wasn't difficult or sickening by any means, so I called the doctor. The doctors (a couple doctors/nurses discuss it and make a decision) decided that Davis needed to be admitted for pain control and observation.
Davis and I left Tuesday evening and arrived in St. Louis around 7 P.M. We have to enter through the ER because the hospital is closed after regular business hours. We were given an isolation room (a courtesy and necessity for immuno-suppressed children).
There was a bit of trouble when Davis' port was accessed. The nurse was unable to get a blood return (drawing blood back into the IV tube to make sure that blood can be pulled out and medication can go into the vein). Another nurse tried unsuccessfully. There was some brief talk about a defective port and/or a clotted port. The IV therapy team was called in. After a long wait and a brief visit from the IV therapy team, Davis' port access was stabilized and working. The nurse pulled blood for cultures and CBC and a bag of fluids was started.
Hours passed. Davis and I watched TV to numb our minds and drown out the cries and screams of babies and children in other rooms down the hall. Not much on in the wee morning hours. Did you know that giant jellyfish are destroying the fish market and swarming the beaches of Japan? Did you know that sharks are pulled onto boats and their fins are hacked off, and then they are thrown back into the ocean to drown? Yep. That's what we learned. Disgusting, huh.
We received some partial results a little after midnight, but his electrolytes had clotted so more blood had to be drawn for another test. Davis was agitated and adamant that he was not going to 9th floor, and after hours of crying, it was decided it was best that he stay in the ER until a definitive decision was needing to be made.
Test results revealed that Davis was dehydrated - nutrient depleted. This is most assuredly a result of his refusal to eat and drink enough to sustain normal function. He had lost a pound as well. 58 pounds now. His counts were low. His white blood cell count was .2 (healthy kids between 5-10), and his ANC (absolute neutraphil count - the immune system. Healthy kids are over 1500) was 0. Zero! We are so fortunate. Many cancer kids experience this, but this is our first zero ANC and we are three months into treatment. Because of his low ANC and his lack of good health, Davis is homebound until he feels better and his counts improve. He also had a low calcium reading, so we are going to supplement his diet (if that is what you call it) with Tums or calcium chews.
We were finally released from the ER at 3:00 AM. We headed to a hotel. Sleep was well overdue. We made it home around 4 PM this evening. Davis slept most of the way home. It was one of the few times that I actually enjoyed the drive. The rain was peacefully drizzling down and the colors on the trees seemed abnormally vibrant. So calm, so serene.
His chemo scheduled for Thursday and Friday has been postponed a week. He doesn't have the counts to support chemo as of now. He will go to Sarah Bush tomorrow to have another CBC draw. This will see if his counts have improved. That is the goal. If his hemoglobin or platelets have dropped, we will make another trip down to St. Louis tomorrow for transfusions. If he still has this migraine and isn't eating or drinking, we will be heading back as well.
There's no place like home. We were gone for about 24 hours, but it has felt like days. Annakate greeted us with whining. It didn't take me long to see her runny nose. I grabbed the thermometer. Yep. a low-grade fever. She's sick. It looks like a cold or something along that line. Davis and Annakate have been quarantined to separate sections of the house, and I am dividing my time and attention between the two. With Davis' immune system being non-existent, it is vital that they stay away from one another.
My poor babies. You don't think about health much until you are not healthy. I pray that my children feel better soon. It is of utmost importance that Davis starts eating and drinking. We continue to pray against all of the side effects and for complete healing, but getting him to a healthier state and getting him back to school is our goal this week. Davis does so much better when he has routine in his life.
Thanks for your support. We appreciate all of the cards, texts, calls, and emails that you are sending our way. Very thoughtful. You never cease to touch our hearts with your kindness.
I apologize for doing a poor job at keeping up with the blog. When Davis is well and his ANC is high enough, we sqeak in as many normal activities as possible. We have been busy lately.
a young monet, perhaps?
Recap of last week . . . Davis had a great week. He was able to get up early on Wednesday to attend his first student student council meeting. The group is getting ready to fundraise for polio. He decorated his "Pennies for Polio" can a few days ago. He sure has been completing a lot of projects as of late. After school, we ran to Sarah Bush for bloodwork before rushing back to Charleston for his painting class. He finished his Monet-style watercolor painting. He began feeling ill shortly after eating supper, so we ended our evening there. I had a hunch that his blood might be a bit off since his energy and appetite dropped off drastically.
field trip fun
Thursday finally arrived. We had to get up super early to go to school because Davis and his class had a field trip to the Challenger Space Center in Bloomington. While the teachers awaited for all of the students to arrive, I armed myself with a bucket of Lysol and bleach water and wiped down all of the seats of the bus. I worked up a sweat at 6:20 in the morning. I rode with a few other mothers as we followed the bus up. The field trip was amazing. I had just as much fun as the kids did. Davis actually thinks he went into outerspace. If you are not familiar with the Challenger Space Center, the kids are given jobs similar to what Mission Control and astronauts would have. Then, they go into this simulated space shuttle to try to complete a mission. They have to read gauges, report humidity, put together a probe, communicate with mission control, measure items using robotics, etc. It was very hands-on. The afternoon consisted of hands-on lessons in physics - a concept hard for 5th graders to understand. The kids were so well-behaved and everyone seemed to really enjoy themselves.
Friday was supposed to be a quick trip to St. Louis. Our appointment was at 10 A.M. The only chemo Davis was to receive was a push through his port (basically a shot in an IV) and a 45-minute platelet transfusion. Normal platelet levels are between 150-400. On Friday, Davis was at 8. Yikes! Unfortunately, Davis can only have a certain type of platelets because of his blood type and the hospital was out of matching platelets. They had to be ordered from the Red Cross, and the Red Cross truck didn't arrive with the platelets until 2:00 PM. No real complaints though. We just hung out in the chemo lounge. Davis played on the computer and I did a lot of nothing. We were finally on our way home a little after 3 P.M. So much for a short day.
I can't believe I did that to him
We pulled into the driveway on Friday evening around 6 P.M. Davis and Annakate were flitting about the car. I was barking orders to help carrying in the collection of stuff that had made it from the house to the car over the course of the last couple of days. I loaded myself down with backpacks, a computer bag, my purse, a blanket and pillow, and used my hip to shut the door to the car. Before I knew it, I was flat on the pavement. Davis, who was experiencing some car sickness, had stepped out of the car and kneeled down in the driveway to allow his dizziness to pass. Obviously, I didn't see him and tripped right over him. Figures. Just when the doctor warns us about his low platelets and no bumps, scrapes, or hits. . . Davis was fine. I did call the doctor because within seconds - not minutes - seconds, the bruises started to appear. Poor guy. His legs look horrible, but thankfully, they don't hurt. He gets a kick out of showing people his bruises. He says, "Hey, look what my mom did to me."
a turtle and a pig
Davis's appetite increase was short lived and he has fallen back into his pattern of not eating or drinking very much. He was back down to 59 lbs. from 61 lbs. the previous week. Kyle has challenged him to weighing 70 pounds by Christmas, but that seems a bit out of reach at this point.
Davis enjoyed pottery on Saturday. He ran out of time to glaze his turtle because he is in the process of making a piggy bank. Definitely a work in progress.
We found out on Friday that Davis is to avoid pumpkin patches, straw, hay, and farming in general. There are many molds that grow on those things and on dead leaves and such around this time of year, and those molds and fungi are what cause serious lung infections in children with suppressed immune systems. Davis complained quite a bit when he found out that he couldn't go to the pumpkin patches he has gone to his entire life, but so be it. There will be next year.
pennies for polio project
Davis starts the next phase in the consolidation phase this week. It is shorter (41 days) but appears to be harder. He will have chemo on Thursday and Friday of this week. He will receive methotrexate (a chemo Davis doesn't particularly do well with) through his port and via spinal in addition to other chemo on Thursday. On Friday, he will receive another set of Peg shots. If his counts (ANC and platelets) aren't high enough for treatment, chemo will be postponed for a week.
fake hair and singing his
version of willow's,
"whip my hair".
Unbeknownst to me, a friend of mine at work organized a get-together with many of my work friends. I thought I was meeting two for supper. There ended up being eight of us. It was incredible to sit with my friends and talk about things outside of cancer. It brought me such peace to know that school life is clicking along without me, but it hasn't changed too much. I think that one of my fears is that so much will change at school (my work) that I will be starting all over again next year. I feel like sometimes I am losing my point of reference. Anyway, it was a perfect evening at Pagliai's. We plan on doing it again. Thanks go out to my friend, Lisa Taylor, for organizing and not taking no for an answer and to the gals who came. It meant a great deal to me.
platelet
transfusion
Friday came and went. Thank goodness. Davis met with his psychologist, and they worked on breathing techniques. Davis hung out in the clinic for the rest of the day. He received his first platelet transfusion. Platelets look like Tang! I guess we just thought since they were in blood, they were red. Not the case. After he received his platelets, he received his Peg shots and Vincristine. He did an amazing job. He cried during the shots, but I am pretty sure that the toughest grown man would have cried too. He said the shots hurt more than usual, and the nurse told him that the dose had increased. Because of weight and muscle loss, his legs are smaller as well. After the chemo, he received a blood (hemoglobin) transfusion, and we were on our way home by late afternoon.
Kyle came up with this idea to have a present on hand to reward Davis for his hard day. I wrapped up a couple of things he had asked for, and we took it with us to St. Louis. He was so amazingly brave and was tickled to open up his gift. It was nothing too exciting, but the Webkins beaver, now named Pegs, and the bakugon were nice distractions for the day. I assumed that we were done with the Pegs for awhile, but that is not the case. Starting in two weeks, Davis will receive increased doses of Pegs shots every ten days or so for 41 days. Looks like I will have to start shopping for more rewards.
junk food galore. oh, and pegs,
the beaver
Davis's appetite has greatly improved. He actually gained two pounds! He now weighs 61 pounds, a far cry from where a healthy ten-year-old should be. He is drawn to junk food. And although the junk meets his high calorie diet and the sweets help with his bouts of hypoglycemia, I don't want him to develop poor eating habits. Davis and I agreed to better eating starting today. We will see how that goes.
Davis went to his first pottery class. He LOVED it. His teacher is extremely nice and knowledgeable and identifies with kids very well. Davis's first lesson was to make a turtle. His homework is to create a dog. He plans on working on that tonight. I am kicking myself for not taking a picture of the turtle. I will be sure to get one after it is fired and glazed. Davis is very much into animals, so starting out with animal sculpting makes sense. When Davis becomes more experienced, he will move to a wheel. I jokingly told him that I better get a mug or a bowl for Christmas.
I am so grateful that so many people are willing to go the extra mile or be inconvenienced by Davis's special needs. It is terribly difficult for a child who has cancer to feel "normal". With the help of these teachers, students in his class, his friends and their parents among others, Davis leads a very "normal" life.
This weekend was pretty fantastic overall. The kids managed to play a great deal of Wii, and we had a movie night/slumber party as is our family tradition. Davis experienced virtually no side effects until Sunday evening. Davis has developed mouth sores (side effect of the chemo). Basically, they are canker sores on the sides of his mouth and on his tongue. Many people get them while on chemo. Davis has been so blessed to have not had them up to this point, and I pray that we are able to keep them under control or that they go away so the mouth pain doesn't affect his appetite.
Davis has a big day on Thursday. His class will be going to Bloomington to the Challenger Space Center. He received the OK from the oncologist on Friday, and he even gets to ride the bus! I know that doesn't sound exciting to most, but Davis has been banned from bus riding because of the amount of germs on one. I find humor in that most kids could care less about riding a bus, and Davis would feel accomplished if he just hopped on a bus for a spin. Perspective, I guess. I am going to remember this experience, and the next time I hear one of my students complain about riding a bus, I will tell them that they should be thrilled to ride the bus. :) Not sure if it will work. Anyway, I do have to clean the area where Davis will be sitting, and I might as well wipe down the whole bus in an effort to keep all of the kids healthy, but that is no big deal. I can clean and sterilize things in my sleep. The field trip should be a blast. The kids have done a great deal of learning to prepare themselves for this day. Can't wait.
Kyle is harvesting acre by acre (as if there was another way). On Friday evening as we were pulling into town on our way home from St. Louis, I noticed a parked combine and three men - three very familiar men - staring into the head. It is never a good sign to see men staring at a parked combine. Needless to say, Kyle picked up an old guy-wire in his bean head. No real worries. It was fixed a day later. Accidents like this happen all of the time; you just don't want them to.
Music has always been a refuge to me. I thought I would share some of the songs that comfort me on this journey. The first one is about breast cancer (October is breast cancer awareness month), but the chorus is so true about all those who love someone who has cancer. I have attached the video if you are interested in checking it out.
Another song I adore is by a band called Rascal Flatts. The very first time I heard this song was when one of my students handed me her Ipod and insisted that I listened to it. Even though I immediately loved it then, the lyrics mean so much more to me now. Click on the link to view:
We continue to get along surprisingly well. We know that Davis is doing so well because of God's goodness and your continued support and prayers. We couldn't have asked for better family, friends, or communities. We pray for Davis to overcome these mouth sores. He has greatly improved in taking his medications without a fight, but some days prove to be harder than others. We are so thankful that he has energy and appetite, and we pray that those continue. We also pray for the health of his classmates. Wouldn't it be quite a testimony if the children in Mrs. Meyer's and Miss. Goodchild's classes escape major sicknesses all year? Well, I am believing for it. We continue to pray against long term and short term side effects as well as healing and CURE.
Looking forward to a great week. I will be sure to take pictures at the Challenger Space Center.
We will keep you posted.
P.S. Miss. Franklin, please send me your email address to abcoffey77@gmail.com, and I will be in touch. Thanks!!
